When it’s bad to look good and good to feel bad

6 minute read

Not everyone has a burning desire to walk the Inca Trail when they get cancer. Some people just sit at home on the couch As GPs, we see many patients with cancer. But what really goes through their minds? As someone who, after a lifetime as a light user, recently transformed into a heavy user […]

Not everyone has a burning desire to walk the Inca Trail when they get cancer. Some people just sit at home on the couch

As GPs, we see many patients with cancer. But what really goes through their minds?

As someone who, after a lifetime as a light user, recently transformed into a heavy user of the Australian healthcare system, here are my observations (all those arguments about n=1 apply).

1: Not looking unwell on the outside creates its own set of problems. It started with my initial diagnosis. A phone call from my GP on a Saturday after receiving the results of a blood test sent me straight to hospital, where a chest x-ray revealed a number of masses, including one the size of a ?st, in my lungs. After having the shit scared out of me by emergency physicians and night registrars all solemnly asking me if I had ever smoked or worked in the mining industry, my ?rst visit with the respiratory specialist the following day started with him proclaiming, “Well, it can’t be cancer, because you look too well. Cancer patients are grey in the face.” After a bronchoscopy and low-level tests con?rmed it wasn’t asbestosis or smoking-related disease, this was a statement I was to hear many, many times over the next six months, a period marked by various treatments that failed to stop the growth of the masses as they spread across my lungs. Eventually, they performed a couple of biopsies, after which the specialist said (and I paraphrase), “Well I’ll be damned, it IS cancer!” By the time I started chemotherapy, my breathing was so laboured that my haematologist didn’t hesitate in signing the form for me to receive a temporary disabled parking permit. However, I still looked reasonably healthy (I was already bald, so losing my hair was a negligible side e?ect). So I took to keeping a walking stick in the car even though I didn’t need one. I would lean on it as I got out of the car and hobble down the street. Then like a New Testament miracle, as I turned the corner or entered a shop, I would stand up straight and carry the stick at my side. I was desperate not to be one of those people who park in a disabled parking spot and passersby wonder, “Is there really something wrong with him, or is he scamming the system and taking away parking spots from people who are really sick”? Meanwhile, friends and family would almost look disappointed when they would see me, saying, “You look so well!” I know that in the back of their mind they were thinking, “Is he really as sick as he says he is?” And I would feel guilty for not looking sicker.

2: A cancer diagnosis is not always accompanied by a life-changing epiphany. Ever since I heard the words “You have cancer”, I have been waiting for that sudden conviction that I should quit my job and a) travel to Machu Picchu and the Pyramids; b) write the great coming of age Australian novel; c) spend more time with family and friends; d) cycle around Australia and raise money for cancer research; or e) start an orphanage in Cambodia. I’m still waiting. At ?rst, I was just focused on coming out the other end of treatment, rather than the things I should be doing to build a legacy. I did hope that all the time I was spending in the comfy chair with a needle in my hand and recuperating would prove to be a time for deep re?ection that would reveal the meaningful direction the rest of my life should take. Instead, I just felt tired and sick, and didn’t re?ect on anything. I did ?nish reading the Game of Thrones books (all 7000 pages of them) and discovered the joys of binge-watching TV series. And now, as remission looks unlikely and my doctors talk about managing the condition, my overwhelming desire is that my life will just return to normal. I want the ?rst question from friends and family to no longer be “How’s your health?” I want to get caught up on the work I’ve missed due to constant medical appointments. And I feel guilty about the mundane nature of this desire when there are pyramids to be climbed, family members to bond with and homeless children to save.

3: The old axiom “You really ?nd out who your friends are when things go wrong” is bullshit. I’ve read accounts from people who say that they were abandoned by their friends when they developed cancer, because they didn’t know what to say to them, or were afraid of catching it, or afraid of confronting their own fear of death. I’ve found the opposite to be the case. We were overwhelmed with emotional support, to the point where every time I visited the doctor my wife and I had to ring, email and text so many people that I considered hiring a virtual assistant. We eventually got to the point where we now say “We’ll let you know if something major changes”. Don’t worry, I also feel guilty about complaining about how many people care about me.

4: Everyone loves a good mystery – until it happens to them. I spent my life wanting to be special. Not anymore. The earlier litany from doctors of “You look too healthy to have cancer” has been replaced by “You are a special case”. Special means treatment doesn’t work in the same way it does in a clinic’s experience or in the published studies. Special means questions like “How long have I got?” are met with a shrug and a convoluted answer that translates as “I really don’t know”. And to all those well-meaning people who say, “I always said you were special” and “You’re going to appear in a journal article”, I say “Hah bloody hah!” And yes, I feel a bit guilty about not being excited about appearing as the subject of an upcoming journal article.

5: Doctors don’t have the answer to everything. You know this already. But your patients don’t. We expect you to have a whole process mapped out to diagnose and treat every illness. If A, then treat with B. If B doesn’t do the trick, try C. And so on. I now see that it is completely reasonable to get to a point where you admit that you don’t know what to do next. I may not like it, but I now understand that sometimes you have to just wait and see. Although I do sometimes wonder whether being a squeaky wheel with my doctors could just save my life. Then I feel guilty about not demanding more intervention.

Dr Ray Welling (not that kind, the other kind) is a writer, publisher and lecturer

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